Archive | July 2014

Another Update

Jul31

Dear Friends,

Recently there have been a lot of questions in the community about what has happened to me and where I am with things. I am now very near the end of life, and writing posts has become next to impossible, but I wanted to try to get one more out. This post will be written in many parts, and may seem rough around the edges, but it is the best that I can do at this point. I know you will understand.

First, regarding care. My initial reevaluation for hospice care was denied – in part due to misinformation coming from the whole CFS mixup. After this, my doctor agreed to treat me himself, without the aid of nurses since he couldn’t find a way to get any into the home. Things began going downhill so fast, however, that he recently talked the hospice team into readmitting me for 60 days, which should be plenty of time for things to finish playing out. So I do have care once again, and words can’t express how much I owe my doctor. No matter how many doors were slammed in his face while trying to get me appropriate care at home, he never gave up, never walked away like so many doctors do. He is an incredibly rare find, and I am blessed to have him overseeing my care.

Second, regarding the medical side of things. My doctor has me on subcutaneous Dilaudid, which is working pretty well for my pain, and finally stopping those horrendous 10s. My bowels have quit working on their own (the nurses can’t hear any bowel sounds whatsoever), so every third day we force them using a suppository or two. So far that’s working out okay. For a week or two I had heavy bleeding out of my private area – the cause of which is unknown since I experienced menopause nearly two years ago, and the symptoms didn’t fit menstruation anyway. It seems to be letting up somewhat now, but the whole thing is still a mystery. I am extremely fatigued and have difficulty staying awake most of the time. I also experience mental confusion, slurring of speech, extreme muscle weakness, lack of fine motor control, and other such symptoms more severely and frequently than I did before. And of course I’m still losing weight.

Recently, my body has begun refusing all liquids. It’s like the food fiasco all over again, but with liquids this time. Everything I try to drink comes back up. I am vomiting many, many times a day. I have tried many natural and prescription “cures” for nausea, without success. The one thing I have found I can sometimes keep a tiny bit down of is Red Raspberry Leaf Tea, although I still vomit that up more often than not. I have not given up the battle for fluids yet, as I’d rather not die of dehydration if it can be helped. There are other things happening in my body which will kill me soon enough without adding dehydration to the table. Recent blood work has shown the biggest contender at the moment to be dangerously low potassium levels. The levels I am experiencing are fatal if not treated, and I have chosen not to treat them. The low potassium is almost certainly a result of both lack of nutrition entering the body and frequent vomiting, and thus is simply one more part of the disease process I am allowing to play out. As time is now so limited, my husband has taken advantage of a federal law (the Family and Medical Leave Act) in order to stay home with me full time until the end. This has been not only a tremendous help, but a real necessity as things have progressed.

Looking forward, there are several more posts I felt strongly about writing. I do not think that they can happen at this point. This may well be my last post, although as I’ve said, my mother has the login details for this site and has promised to post an update once I’m gone. She is also fully qualified to answer any questions you may have for her at that time, and has promised to do so as time and circumstances permit. I just wanted to say how very much I appreciate all of you. The fact that you all have been so supportive, both in your comments and in sharing my posts around the web, means more to me than you will ever know. The ME community may be very ill, but we are also very strong. Thank you for showing and sharing that strength with me. God bless.

Clarification

Jul14

(Note: if you haven’t read the post prior this one titled “Final Stages,” you will want to do so before reading on. Click here to bring that post up. Thanks!)

Hey guys,

First, let me say a huge thank you to everyone who has liked, commented on, and/or shared my last post. The outpouring of support from the ME community and elsewhere has been nothing short of amazing. Unfortunately, as I am now averaging literally hundreds of responses a day, there is simply no way for me to reply to individual comments. I am trying very hard to get together enough working brain cells for two or three more posts I feel are important right now, so energy conservation is an absolute must. Still, I couldn’t post this without letting you guys know how very much your support has meant to me. Thank you!

Second, I made a bit of an oversight in my last post by forgetting to mention at least some of the history leading up to this decision. I had not expected that single post to go viral the way it did, so had assumed most people reading it would be somewhat familiar with my journey prior to this point. Oops, lol. That said, let me explain. The decision to stop eating is not something I came to easily or quickly, nor is it something I decided on the very first time I found myself unable to get or keep food down. My case of ME is progressive, as opposed to chronic or relapsing/remitting, which are more common forms of this disease. I have had ME for over a decade, during which the disease has made clear and consistent progression regardless of any and all methods tried to slow it down or force it to stabilize.

Yes, I have tried it all. The diets, the supplements, the forced rest, living within the energy envelope, etc. You name it, and if it is a legitimate option to help people living with ME, I’ve tried it. As far as the nausea itself goes, I have tried multiple medications in several forms, including but not limited to: pills, oral liquids, sublingual (under the tongue) medications, creams, and suppositories. I’ve also tried diet and lifestyle changes. Nothing has had any effect whatsoever in helping my nausea. In fact, I had bad reactions to several of the anti-nausea medications that actually forced severe vomiting instead! Ironic, huh? As for liquid diets, while I was able to live on them for awhile, I can no longer keep them down, either.

One of the posts I plan to write very soon will be on what we believe to be the causes of my particular digestive issues, as well as those common in ME. Yes, I said “causes,” plural. I don’t believe at this point there is one single cause behind my digestive issue, but rather two or three, all common in ME, which have combined as the disease progressed to create an entirely untreatable situation. I’m sure the doctors could figure out something via artificial nutrition methods, but my last post explains my reasons for turning away from that particular route.

In any case, I wanted to post this to explain: This is not a decision I or anyone else should rush into. There are many types of treatments which exist for various causes of nausea, and it’s important to try to find a fix before making this type of decision. This has been a long, long process for me, and I wouldn’t have shortened it for the world, because now I know that I know that I know I am making the right decision for my circumstances. I have peace about it – even if I am a little nervous about how it will all play out.

Once again, thank you all so much for the tremendous outpouring of support and understanding I have received over the past few days. It means even more because I know many of you also struggle with each word and sentence you write, yet you chose to spend precious energy writing to me anyway. You guys inspire me every single day. Much love to each of you.

Final Stages

Jul11

Dear Friends and Family,

This is a post I’ve been putting off for quite awhile. But I no longer have the luxury of putting it off anymore – not if I want it to get written. My personal journey with ME is near its end. A long time ago, after months of deliberation, I made the decision that if my digestive issues ever got to the point where I could no longer get or keep food down naturally, I would not seek life sustaining measures, but would allow the illness to play itself out naturally. I am at that point, and have been for awhile now.

Let me preface this by saying that none of this is a judgment on those severe ME patients who choose to take advantage of technology like nasogastric tubes, hydration IVs, etc in order to remain alive as long as possible. I believe this is a highly personal decision, and what’s right for me may not be right for the next person (and vice versa). For me, this decision was made based on the knowledge of what ME often turns into for those who accept life sustaining measures. As bad as things are in my current situation, they could get even worse. ME truly can become a living death – except with much, much more suffering – a large portion of which is untreatable. This is difficult not only for the patient, but for loved ones who have to stand back and watch the process, longing to reach out and help but knowing their very presence only increases their loved one’s suffering a hundred fold. I have already experienced much of this. I cannot personally justify enabling it to continue and worsen via medical technology – not in my specific case. That said, each person must decide for him/herself when enough is enough, and where their individual priorities lie in terms of life and the quality it holds for themselves and those around them.

Right now, my body is literally starving itself to death. Even my best efforts to get food down have been met with frequent vomiting, rapid weight loss, and clear disease progression. The fight to get food down is exhausting. It involves closely monitoring nausea levels every single waking moment, waiting for the one minute window I may receive each day where my nausea subsides just enough that I think getting two or three bites down might be feasible. Even then, I nearly always lose the food anyway. The excess weight ME once placed on my body is coming off extremely fast. Just one example: I have dropped over an entire ring size just since the end of May. You don’t lose a whole ring size just from dropping a few pounds. It takes a significant amount of weight loss to make that happen. Everything I own is loose on me. In fact, the other night I was shocked when able to pull my wedding ring off for the first time in years!

Because the food battle has become so exhausting and completely pointless, the decision has been made to stop trying to force feed a stomach that clearly can’t handle it anymore. Ironically enough, stopping all food has actually lessened my nausea significantly. Still, all it takes is one bite for things to skyrocket again and my food to come flying out, totally undigested, either the same day or the one following. So no food for me. At this point, I have already begun experiencing some hypoglycemic symptoms. Also, my resting heart rate has shot up to 120 bpm. Several other new symptoms have also developed. Needless to say, it won’t be long now.

The biggest issue I am currently facing in all of this is a complete lack of medical care. My most recent post explains some of how this happened. Much more has happened since then, and I fully intend to write a post specifically about that as soon as I’m able, but for now, the basic situation is the same. No care. I am in the process of trying hard to get back into hospice care for this last leg of my journey, and will let you guys know how that turns out. My biggest fear at this point is that my husband and I will be forced to go through this completely alone. Among other things, a hypoglycemic coma is almost certain (assuming my heart holds out that long), and it terrifies me to think of my husband having to deal with that alone, with no doctor or nurses overseeing the situation. This should not be happening in today’s society! But it is. And people need to know it happens, often to the very sickest among us. But more on that in a later post.

For now, I simply felt the need to update everyone on how this disease has progressed, where I’m at with it, and how it is most likely to play out in the near future. Should something happen before I get a chance to write future posts, my mom (who works in the medical field) has promised to take over this blog for me. She will write a post updating everyone on the situation, and has my full confidence in being capable of answering any comments or questions left on posts in the future. I appreciate her taking on this responsibility.

My deepest love and gratitude goes out to everyone who has been so supportive of this blog. Several of you have become good friends, and writing this blog has given me a sense of purpose – something we all need in life. I hope and pray this post finds everyone doing as well as possible. I’ll keep working at adding new posts as long as I’m able, so keep your eyes peeled!

Edited to add: Please check out my subsequent post, Clarification, for a bit more explanation of the history behind my digestive issues and various treatments tried and failed. Thank you!